COOPER SCARE...

Tuesday we saw Dr. Kelley, Cooper had lost 5oz. I was so shocked. He had been eating and drinking so well. I was very disappointed but Dr. Kelley explained to us that it will take approximately 3X as many calories per kilo of weight for Cooper to gain weight than it would a normal baby. Therefore, even though he is actually consuming about what a normal 11 month old would be, he is loosing weight because his body (heart) is working so much harder. In addition, he is getting so active. He is all over the place and very close to walking. He never wants to sit still these days. We are up to 2 tsp of Whey Protein and 2tsp of Carnation Instant Breakfast in every 8oz bottle in hopes that this will give him extra calories. He is also starting to eat some "solid" foods. He eats 1/2 to an entire container of baby food in the morning and then has 5 to 10 bites mid day and about the same at dinner. Dr. Kelley did warn us though that we did not want him to start eating so many "solids" that he decreased his milk intake because this is where he is getting the most of his calories. So now that we have pushed and pushed trying to get him to eat, we also have to be careful he does not eat too much! It is crazy! I did ask Dr. Kelley about our supplies for feeding him by NG Tube and he said I could return them because at this point if we have to do something it will be the G Tube. We will not worry too much unless his actual volume of consumption decreases. I was really disappointed about his weight loss but hopefully he will start to gain soon.

Tuesday night when I got home I went out to get the mail and had a package from my Aunt in Alaska. She had told me she was sending us a scrapbook but what she sent was much more than a scrapbook. I opened the package and sat right down on our kitchen floor with Cooper and Raelynn and browsed through the memories she had captured. She actually took this blog from the first entry I made after Cooper's arrival all the way through the 4th of July. She inserted pictures and accents and it is amazing. I read it that night and the tears just ran down my face. Rereading it just reminded me of how scary and hard it all was and how fortunate we are. This was an amazing gift. I cannot wait until Cooper is old enough to appreciate it too. It will definitely be treasured and I am so grateful for her time and effort and thoughtfulness. Thank you Aunt Wilma!

Wednesday morning by 8am Cooper was still sound asleep and we hadn't heard a noise from him since we had put him down at 9pm the night before. I have to be to work by 8:30am so I went in to wake him and get him ready to go. As I picked him up I notice a purplish tint to his lips and as I started to undress him noticed his hands were purple. My stomach sank. I first pretended not to notice and just got him dressed, gave him his meds and fed him. Terry was still in the shower so I hollered good-bye and headed to Lisa's. When I arrived I asked her if they looked purple to her, with no hesitation she agreed. I called the doctor and since they had just seen him the day before they really felt every thing was fine but we were headed to CMH that afternoon for his pre admission appointment for his MRI so they said to have them check his SAT level. We explained the situation when we arrived there and they took his SAT level. It was at 83 which is pretty normal for Cooper who usually is at about 85. After seeing the anesthesiologist they concluded that because of his poor circulation he was probably just cold and therefore led to the discoloration. The same thing happened this morning too so tonight we have turned on the heat, he is dressed in a very warm sleeper and I tucked the covers all around him so he could not kick them off. When I head to bed if it is a little cool I will turn on a heater we have in his room as well. I do not like seeing him purple. It literally makes me sick to my stomach. After reading back through the scrapbook my Aunt made and the scare of the purple hands, I felt very sad walking into CMH for his appointment Wednesday afternoon. I could not help but think about the fact that in 6 to 8 months we will probably be back there for yet another open heart surgery and I am still far from ready. Just thinking about it now the tears come to my eyes. I don't know what my deal is, I have never feared or dreaded anything like I do our next stay there. I think I am so scared to loose him now. He is such a little person now with his own personality and he is everything, just like Raelynn is everything, and your kids are everything to you. I never think about loosing Raelynn but fear loosing Cooper daily. I really try not to think about it or dwell on it but when I think about actually facing another open heart surgery I cannot avoid those thoughts. And then there is the whole ECMO thing. Even at our appointment one of the nurses said, "I can't believe he is an ECMO baby." We know now how grim things are when your baby goes on ECMO. We know that outcome is not in our favor. We know we are the lucky ones. Would you want to play those odds again? What if it comes to that again. I didn't know then what I know now. I don't know if I could sit there day in and day out waiting...just waiting with nothing to do and nothing to think about except the fact that Cooper is on ECMO and could we be so lucky to survive ECMO a second time. In the past I always said I want to know everything. It is what I don't know that I fear but in this case, not knowing the severity of the situation was much better and now I do know and therefore I am terrified. I still have several months to get past this and I will, for Cooper I will. Anyway, the MRI is set for October 28th. The anesthesiologist did say however that the littlest runny nose will keep us from doing it so unless Cooper is 100% the procedure will be rescheduled. I know we need to get this done and I will not prolong it unnecessarily but honestly I would not be the least bit upset if it is rescheduled.

On a lighter note, I now have a facebook page. I know nothing about it nor will I ever use it but I have it. I am determined not to get old and out of touch. Jill signed me up and I think I have 3 friends as of now; Jill, Steph and an old aerobics instructor I knew. I like this blog much better :) Also, Terry and I met with a funeral home to preplan our funeral. I know this sounds crazy but after going through this experience, I don't want my kids, Terry or I to have to worry about it if something should happen to one or both of us. It is really simple and I feel like we are doing such a good thing. My death I have no problem with, it is the death of those I love that I struggle with. My next step is to set up a will of some sort. That will be the next subject I embrace and learn all about. I wonder if I will ever run out of things to do and learn or projects to complete. I can't imagine how great it would feel to be able to sit down and relax and truly feel as though you have nothing to do!!!